Elise Orange is a clinical psychologist, a mum of two young girls and has an older sister with cystic fibrosis (CF). Elise has been involved in the CF community for many years, supporting her sister. During the Evening with CF Scientists event, Elise provided an amazing, heart-warming and informative presentation about her involvement with the TKI Consumer Reference Group and why it’s a worthwhile group to be part of. Here is her presentation:
“Thanks for having me here tonight. It is exciting to see all the different opportunities and advances currently being pursued in the research and treatment of CF. I am representing the TKI Consumer Group tonight and I am looking forward to talking about who we are, what we do and why we do it.
Who is in the consumer group?
The group is made up of people who are quite different but who have one thing in common; their lives are impacted by CF. Many members of the group are parents of children with CF, but we also have an adult who lives with CF and I attend because I have an adult sister who has CF. One of the really important and useful features of the group is that it is also attended by Ali Stone (CF Clinical Nurse) and Dr André Schultz, who provide treatment through Perth Children’s Hospital (PCH). We are also fortunate that Kathryn Pekin from Cystic Fibrosis WA attends, and she supports us in reaching the wider CF community, as well as talking through what has worked in the past and what is currently available to support families in the CF community.
The group wouldn’t be possible without TKI, who not only conduct the research, they host and provide all the important logistics and administrative infrastructure to support community groups like this to move from a talk fest to actual action and outcomes, so thanks Kaye Winfield (research coordinator at TKI).
What do they do?
Our group meets four times a year for two hours. It doesn’t sound like much, but we jam a lot of content into those meetings. Sometimes we have to finish without finalising everything we planned to talk about, but what we do get through is important. We hear about, and then provide feedback, on a wide variety of issues and opportunities. Most of the projects here are presented to the group first and we try and consider the impact of the research planned and how it can be undertaken in ways that are going to have the most positive impact on families and individuals in the CF community.
Members have enjoyed hearing about a wide variety of projects across the spectrum of research, from surfing to airway epithelia. When asked, members recall participation in the Circle of Care and the Beat CF projects as highlights, but really, we have been so fortunate to hear about a broad range of important projects.
If you are a medico or a researcher here tonight, I want to pause and tell you that you are our super heroes. You get up in the morning and you put your undies on under your tights, but don’t doubt that the work you do has changed the world.
As well as getting a sneak peek into what is in the future for the treatment of CF, we also discuss current clinical issues for families accessing clinics and inpatients through PCH. We hear from the hospital about issues like infection control and programs like KKind (Keeping Kids in No Distress) which support the psychological health of children. We talk about the day-to-day living stuff. We talk about important medical concerns and about what is hard in accessing supports and treatment when you are family, or an individual impacted by CF. This is information only we have.
Why we do it?
And this is why we do what we do. My sister is older than me, so I don’t have any memories of life without CF. My sister’s health and treatment share the patchwork of childhood memories alongside family celebrations, dentist appointments, school assemblies and tv ad jingles. Although I am sure most of you are probably really excited about moving from Princess Margaret Hospital (PMH) over to PCH, I will admit to a bit of nostalgia. I visited this hospital every three months of my childhood for my sister’s clinic visits. I came here more often than the homes of some of my country cousins, and Dr Des Gurry was as much a part of my family’s story as my Uncle Gerrard who lives in Victoria and was once on the Wheel of Fortune. Des is gone now but his name lives on in my memory. As an adult I understand that he and his colleagues kept my sister alive and well but as a child he was just the kind man who we visited at the hospital.
This is the lived experience of families with CF. We hold special knowledge that professionals in the field can’t share. We live the day in day out, knowing what loss of lung function looks, sounds and feels like. Not just a change in cough, but the tiredness, the lack of motivation, the fear, the worry; is it bad enough to call the clinic? We know how powerless it feels to hand the care of a loved one to someone else. Someone who doesn’t know that the smell of eggs is enough to make her dry retch, but she will eat smelly soft cheese and pâté under water.
As families, we know that while treatment regimes can look straight forward on paper, in practice they don’t consider that no three-year-old ever wants to do anything they are told. Ever. They don’t consider that teenagers are aliens who inhabit the bodies of living humans and turn them into unknowable mysteries. As families we know that hospitals and staff care for health, but that being well is not just about lung function and weight gain. It is about feeling safe on the first day of school and having a part in the school play and going for sleep overs and dealing with boyfriend angst and finding a group of friends at uni and getting a job you can keep even if you have to have time off to go to hospital. I recall that when she was well my teenage sister could yell “don’t touch my stuff” very loudly! She wasn’t much quieter even when unwell.
Hospitals care for our health, but families heal us, and that healing comes from a knowing that a medical professional cannot share.
We are enormously privileged to have a world class hospital that works alongside a world class research facility to provide world class health care for families. The people who work in clinical care and research around CF in Perth know so much and they are learning more every day.
But they don’t know what we know. So, we, at the TKI CF Consumer Reference Group meet with them. And we tell them. We ask questions about their research and we ask the questions they have never thought of and that drives their research.
That is why the Consumer Group exists. It is a privilege and a responsibility. It takes time and energy, but research can change the world and we can help.
When my sister was born, my parents were told that she would be short of stature and of lifespan. She is now a little under six feet and a little over forty and going strong. Research changed the world she was born into.
If you are wondering about my sister, she works here at TKI. She is one of the superheros. Her name is published around the world and she is changing the world. She still gets annoyed if I touch her stuff without asking and unless she is dressing up to play with my girls she usually wears her undies under her tights. But don’t ever doubt she is a super hero and together we are changing the world”.
For more information about the TKI Consumer Group, you can contact Kaye Winfield at Kaye.Winfiled@telethonkids.org.au or 08 9489 7818. The group is particularly keen to have some dads involved.
Article from RED Magazine, Edition 3, 2018.